Those that shout loudest get heard

[Adidrive]

In the last 4 months I feel like I’ve been banging my head against a brick wall. The care home that Jess is in, still on a temporary placement, do their best but the stroke team withdrew input after Christmas, despite the clear improvements that were happening. One of their dealings was saying that although the splint for her left leg wasn’t fitting properly that she would have to put up with it. Fortunately the care home got a a referral to orthotics at Colchester who are rushing a new splint for her and said an angry email to the stroke team.

Her left hand, that was beginning to work has sadly returned to nothing at the moment so I’m having to shout and complain just to get her some input to help her.

I’ve got an ongoing complaint against RNRU at Homerton for repeated failings, including discharging her with a splint for her arm in her leg.

I’ve also got an ongoing complaint against Adult Social Services for dragging their feet with the care assessment, for trying to put her in a care home for the elderly, for not getting her name right and for talking to me like I’m a child. What social services don’t know yet is that, on the advice of a Childrens social worker, I wrote to our local MP, who has agreed to look into the whole situation.

The only good news, and this is only because I made a complaint through PALS, is that Queens at Romford are going to do her cranioplasty at the end of this month, fingers crossed, but it’s wrong that this is only happening because I know the system and I know how to complain. She has a partial trephined and yet they still didn’t do anything until this month.

I just wonder how many stroke survivors there are that are not getting what they need and deserve.

The desperation that I feel at her situation is horrendous and it’s compounded by my own issues, having to work, trying to do it all on my own, missing my soul mate and having PTSD because it all happened in front of me (no I’m not on a pity party, I’ve got this far and I’ll keep going).

At the end of this month it will be a year since Jess had her stroke, and I will not rest until she is getting all the rehab she needs, I will not have her stuck in a corner and ignored

[Adidrive]

Forgot to mention, social services did a financial assessment and although Jess has a weekly charge of £0 they still sent, because it’s an automated system, an invoice for £10,641, with no thought of how that would make either of us feel

[philbou]

Hi adi

Is there a community brain injury team in your area

I’ve been getting advise and help from them

They are kind of the middle men between hospital and social services

I hope Jess crainoplasty goes well

It’s a worry but it makes her whole again

That’s how I felt when Vicki was back together

Maybe once she’s back in hospital in recovery

You can use it as a bargaining chip to push for nuero rehab again

It’s been a long time for you both

but you’ve kept in there

Sometimes we forget what we’ve done over this year

Take a little time to reflect on how far you’ve come together

And to the day you be back home together once again

[cat3]

Good advice to get your MP onboard Adi. My daughter in law waited 18 months for urgent, extensive surgery as it involved three surgeons with three different specialisms present in the operating theatre at the same time.

After my son contacted our local MP his partner was admitted and had the surgery within three weeks.

Hope you get some positive news soon. Good luck. Cat x

[sue-66]

Well done you! I had to fight in a lot of ways for my partner and we have been lucky, there are lots out there, who struggle to get what is needed.

[FlowerPower62]

That's awful, I hate hearing things like this, as you would like to think that everyone involved is doing their best. You could really do without it all, with everything else going on. How old is she? You are doing an amazing job fighting her corner. I got fed up asking for stuff for my husband, and as he has finally been awarded PIP we are able to afford private stuff, I hope some of it works! Good luck to you both. x